new here(16)

my2goldens

I thought it was the memory loss/delusions that was going to put me over the edge. Sadly, the toileting issues have arisen and I am about at the end of my rope. LO (husband) wears protective under garments night and day, urinary incontinence has flared up. So far not any bowel incontinence. But he seems to have forgotten any toilet habits at all. Just went to the bathroom, and used the garbage can as the toilet for his bowel movement. I don't know if I am up to this job, every day I am filled with anxiety/depression/ anger. I know it's not his fault, but today, I am ready to throw in the towel.

David J

Welcome, my2goldens, to the club no one wants to join. There are others who will be more detailed in their advice, but if you have not completed POA, Will, Advance Directives, etc, do it soon. Others have advised using a Certified Elder Law Attorney, particularly if Medicaid is in the PWDs future. 

The problems you outlined have caused many caregivers to place their LO in a Memory Care Facility. I am one of those caregivers; I placed my wife in respite care last month so I could have surgery. Over the respite (which hasn’t been mu h of a respite) I realized I can no longer manage her at home. You may need to consider this. 

You don’t mention what care your husband is getting now. If you have a neurologist or geriatric psychiatrist prescribing meds, tell them about the delusions. My wife had delusions which were greatly reduced by anti-psychotics. What couldn’t be controlled was the restlessness, anxiety, and exit seeking. After her MCF stay was scheduled, she started wandering. I mention my own situation just as an example of how a caregiver reaches the point where a loved one’s needs exceed the caregiver’s ability to provide them.  There is no failure, or guilt, in this decision. It is providing the best possible care for your loved one, regardless of who provides it. 

You need to do what works best for you and your husband. You need to remain physically, mentally, and emotionally healthy for your husband. That way you will be around to manage his care.

You’ll find a lot of caring people here, and we want to help. Post updates, and good luck. 

my2goldens

Thank you. He is under the care of a neurologist, and our primary. Is on the maximum dose for Donepezil, Memantine, and is prescribed Seroquel 25 mg twice a day. Has had MRI's, CT's, to rule out any disorders that might cause the memory loss, besides Dementia. All clear. I am trying to find an adult day care, have contacted the only one locally and am waiting for a call back. Am considering in home health care, just so I can have some relief. It's a nightmare, but you already know this. Kids of course help as much as they can, but they all work full time. So if on the rare occasion I have an event to go to, they do offer to take their Dad. Now with this toilet issue springing up, that might even become too much for them to handle. Thank you for your kind words and understanding, this is a road I never thought we would be traveling. But here it is.

M1

my2goldens, if it makes you feel any better, incontinence is one of the top reasons for placement.  You don't need to feel bad if it's beyond you.

We're lab folks here, but goldens aren't far behind.  All of them could knock us A** over teakettle at this point, but I still love them....hope they provide you some comfort as you go through this.

Ed1937

My2goldens, welcome to the forum, but sorry you need to be here.

It doesn't really matter why people reach the end of what they can take. If they get there, they need to find more help or consider another residence for LOs. I know what you're talking about when you mentioned him using the trash can for a BM. My wife has sat on dining room chairs and a folding chair to use as a toilet. But so far I have caught her in time to get her to the bathroom. It's probably only a matter of time for us.

I'm sorry it is so hard for you, but remember that we understand, and we'll be here for you.

Jeff86

One more welcome, 2goldens.  It is as M1 says…for some caregivers, incontinence becomes the bridge too far, that leads to placement.  We all are pushed to our limits with this disease, and perhaps you have discovered yours.  We are at the urinary incontinence stage with my DW.  But there’s an analogy with dogs….anatomical differences could make male incontinence a lot messier than female incontinence!

We were a 2 golden family for a while, down to 1 now.  Sadly, my DW doesn’t remember that she’s our dog, or her name.  But here’s a pic of our English golden, to brighten things up a little.  

Crushed

my2goldens wrote:

Thank you. He is under the care of a neurologist, and our primary. Is on the maximum dose for Donepezil, Memantine, and is prescribed Seroquel 25 mg twice a day.


FWIW SEROQUEL  caused bowel/ toilet related issues with my wife They titrated the dose lower   and improved the situation. 

Joydean

My2goldens, welcome. I’m new here also. But I can say just the few weeks I’ve been on this board has been a life saver for me. No one wanted to be on this road to hell, but here we are. It is a learning process for me. We did not have big dreams about retirement, just to enjoy our time together. Best of luck to you!

LadyTexan

Welcome my2goldens.

This forum has been a lifesaver for me. Our dog Hap has been the best medicine for us both 

Buggsroo

The other day, I saw my husband urinating in the sink. The kitchen sink where I wash dishes and such. I admit I felt quite exasperated, but realized I couldn’t get too angry, his thought processes are very disordered. He also has fecal accidents if he eats too much ice cream. Sigh.

I feel for you. I clean up cat poo and husband poo. 

An addendum here, went upstairs and found my husband attempting to clean up a poo incident in the kitchen. I didn’t take it well. Ended up shooing him to bed and washing the kitchen floor as well cleaning off poo on the husband. Living the dream.

Grandx7

I am new to the site also and for me, it has been a struggle - daily - to come to grips with all that this diagnosis entails and verbalize out loud that my husband has this disease.  It is a personal struggle that I am sure all deal with at different levels.  I was in a state of depression, denial, grief, frustration and loss of our lives that we were used to.  I am not on any social media sites and very private so this was a huge leap for me to join but I just needed to buck up and deal with the hard facts and seek some help, ideas and consoling from others that are in the same situation.

This site has been overwhelming and very helpful.  I am trying to navigate the whole spectrum of symptoms while attempting to get through a day without crying.   I am a retired nurse and used to making people better - not able to do that this time.  I was aware of changes in my DH about 16 years ago but he was still very capable and functional on must fronts.  The last 7-8 years has seen many changes with the last 2 being very significant.  He is still able to take care of himself -  with some prompting.  Lately, he has been telling me that he doesn't feel he will be living much longer.  He said that he thinks he will just not wake up one morning.  There is nothing physically to support this comment, just that he has this as a common thought at night while he's sleeping.  He says he has these crazy visions going on inside his head but gave no specifics.

I know this is more than you probably were wanting - I just found myself dumping what has been on my mind.  I am familiar with people having visions of dying or feelings that they are not going to be around much longer or going back in their memories of their favorite places but these were all with people who were elderly or cancer patients.  I am not familiar with dementia, FTD, etc and all of the nuances.  If there are any tips anyone can provide or a site with specifics on this awful disease so I can try an prepare and navigate, I would appreciate the help.  I have read lots but not found anything on this vision of their lives ending and a timeframe associated with the vision.

Thank you!

my2goldens

Thank you all for such a warm welcome, and good advice. Working on staying patient, understanding, and making sure he goes to the bathroom every two hours or so. It's gotten to the point where I have to take him there, and remind him what to do. I babysit our youngest grandchild two days a week, the irony of changing the diapers of a toddler, and making sure her Grandpa toilets properly, is odd and very sad at the same time. Had a good talk with my daughter last night, she has finally realized that sooner rather then later I might have to make some decisions that will be very difficult. But she also has come to know just how difficult this journey has been. On the rare occasions that I do a weekend activity with my dogs, she has watched her father. Told me the other day, Mom, I now know what you are going thru. Her children are grown, but she now has three grandchildren, and she and her husband both work full time, so their available time is limited. We also have three sons, two live out of state, one lives locally. He and his wife also volunteer to watch Grandpa, but have four young children and are busy caring form them and both working full time. I am doing the best I can, but sometimes loneliness and sadness overwhelm me. Will keep plugging along. That's all any of us can do.

DrinaJGB

Just fyi---a UTI can cause sudden shifts in behaviors/incontinence issues as well. If your LO is not well hydrated throughout the daytime--(which of course brings up the peeing issue)--then the dehydration can lead to a UTI--which then leads to bizarre behaviors and increased incontinence. 

Also keep in mind that caffeinated drinks and alcohol also dehydrate the body. Water, non-caffeinated herbal teas like chamomile and lemon/ginger (lemon to add acidity and ginger acts as an anti-inflammatory), cranberry juices are all beneficial for keeping the body well hydrated.

Food luck.This issue is just about the hardesrt one to deal with.

Gig Harbor

Welcome Grandx7,

I am also a retired RN and after 36 years of working in ER’s I really did not want to take this journey. You mentioned not being on social media but there are some great dementia groups on Facebook. They are private and questions and answers are in real time. No matter what you are facing someone there has also had your same issues. A lot of people just go on there to vent so it is a safe arena for that. The other thing it does for me is make me realize just how good I actually have it and I need to be reminded of that on the dark days. Another great blog is written by a woman in England and I identify with everything she says. She has a great attitude about self care and coming out of this valley of darkness as a healthy, functioning person. Her blog is called Memory for Two. I hope you are able to pull help from all of these areas as it really does help. On Facebook several of the groups are:

Dementia Caregivers Support Group

Memory People

Alzheimer’s and dementia caregivers support chat group.

And last this is a blog written about Peters journey by his wife. It is called Oh Hello Alzheimer’s.

They are many more that speak to FTD or early Alzheimer’s.

Grandx7

Thank you for the info.  I will check out the blog.

Battlebuddy

   Grandx7,

   I am interested in your thoughts about loved ones saying they will die soon. I have some experience with that . If you go to the message board and click on it you will see a green box that says Add Topic. You can click on it and start a new thread on this topic. It would be interesting to hear others experience with this. If you do I will tell you my story.